Alexandra Robin

Help me raise money for Neurofibromatosis
  • My Goal:
  • $5,000
  • Raised So Far:
  • $1,589
  • # of Donations:
  • 19
$1589 of $5000 goal
WHAT IS NF?
YOUR DONATIONS AT WORK
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Yesterday, October 14, 2017,  after such a discombobulated season, we did what we set out to do: complete a big ride for the Children's Tumor Foundation and Neurofibromatosis.

The Lighthouse Century was epic this year. It's a local ride that's been going on for about forty years and known for the fantastic tailwind for much of the second half of the ride. In those days it left the San Luis Obispo Mission and went straight up the coast to Piedras Blancas Lighthouse and back.  The route has changed for different reasons over the years and this year, with Highway One closed past Ragged Point, the ride started in Morro Bay, went up HIghway One, jogged up and over Highway 46 to the outskirts of Templeton, then back out to the coast and continued north to a turnaround a few miles south of the lighthouse. Climbing 1,752 feet up Highway 46 from sea level and the beautiful Pacific (mile twenty to thirty-five) we had gusts of wind slamming us at over 40 mph. 

When I was riding in the 80's I heard, "Bike racers in Holland don't have hills but they have wind. That's what makes them mean." It wasn't a judgement on who they were off the bike, rather a compliment to their strength and perseverance on it. It's one thing for my small frame to get blown about, but my big strong beau came within inches of being blown down a steep mountaiinside from the well-marked, eight-foot wide highway shoulder on which we rode.

We had swirling crosswinds all day and with all my grumbling at the wind I thought of kids with NF who can't ride a bike. I passed out the card I'd made to many people who asked about our jerseys. "END NF" they read. People showed genuine care and interest when I shared a bit of my story.

That afternoon we went to a completely unrelated wine event. Having dedicated the day to NF I was wearing my t-shirt version of the same design. A woman from out of town (who had been invited to the event by a friend at the last minute and had driven 200 miles north for the day) approached me and told me her friend's eight-year-old had NF and was bound to a wheelchair.

I have the same gene as that little girl, Abby. The woman said Abby's mom didn't even know the Children's Tumor Foundation existed and was coping with everything on her own. I swear that woman was a beam of light. Her positive energy and happiness glowed! Later that afternoon she seeked me out and thanked me again, told me she couldn't wait to tell her friend all about CTF and meeting me, and said she'd be in touch.

If nothing else came of the day; if all of the business cards I handed out during the ride have gotten tossed in the trash without a thought, THAT made it all worthwhile. 

Your donation made that difference.

Thank you so much for your generous support!

For a look at the ride click here.

 

UPDATE #2!!

Wellllllll, The Napa Valley Century went on without us. After driving twelve hours round trip and staying in hotels two weekends in a row we couldn't justify another trip away so soon after our ill-fated trip towards The Death Ride. Now the plan is to stay local. On October 14th we will participate in The Lighthouse Century right here in our own backyard. What a discombobulated season this has been!  In the winter months rain kept us off our bikes. These summer days with temperatures soaring over one hundred five degrees have done the same.  October on the coast will be delightful. 

 

UPDATE!!!

As the week tumbled by with the truck back home and ourselves back at work, I finally had some time (at 3:40 a.m.) to add this update. Actually I'd been trying to write it up for days in the form of a card to send out the old fashioned way to all my generous donors but decided to resort to writing an email to them because this is truly just an update with a twist; and I'm posting it here as well.  There is more to come...
 
On our way to The Death Ride at about 9 pm on a dark mountain Highway 88 (sounds like a song!) while pulling our twenty-four foot camping trailer, our Ford 250 truck's alternator died.
 
We limped without headlights or any other power in the truck for what seemed like a very long time though was probably less than five minutes, to a place to pull over and figured we'd sleep and deal with it in the morning. Here's what happened:
 
July 6: After pulling over with the dead alternator, two nice CHP officers came by and the one in the SUV strapped the truck and trailer up and dragged us fifty feet forward to get out of the way of a gate and fence.
 
July 7: WBF (Wonderful Boyfriend) hitchhiked six miles to town for a new alternator, got a ride back with an Auto Zone employee and they installed it on the side of the road. We thought we were on our way but the truck continued to have issues. After many stops and starts, the CHP escorted us to back to Auto Zone to charge the truck batteries. We limped to the recommended auto shop three miles away. We learned that the transmission was toast and decided that towing it home was the best option.
 
July 8: We coordinated a tow home and how we were going to store the trailer for the week.
 
July 9: The tow service from homeng left at 3:00 am and drove the 268 miles to pick us up. Great guy, bench seat, no air conditioning, 106 degrees.
 
July 10-14: The transmission was rebuilt by our local mechanic.
 
July 15: With the new transmission, we drove back up north, picked up our trailer, and took a mini-vacation wandering old western towns while waiting for the shop to open on Monday morning.
 
July 17: Hooked up the trailer and drove it home.
 
Soooooooooooo, on our way home we decided on our "make up" century. There are many from which to choose between now and the end of the season, but as it turns out, on August 20th The Napa Valley Century has an official NF Endurance Team participating! The director of the program has offered to set us up to stay with a family affected by NF the night before the ride. I have the feeling that it will be an amazing experience.
 
Join us!! Think about it! Seriously!!
 
I will keep you posted, but to keep you even up to date with the most current shenanigans, go to https://doublecommitment.com to see the latest.
 

...My original post:

Many of you know my passion for riding a bike lots of miles in one sitting, but I think only a few of you are aware that I was born with a genetic disorder called, "Neurofibromatosis 1." I've often thought I should combine the two and organize some sort of bike ride fundraiser for research and in the last few months the idea snowballed. I'd been thinking about finding an NF bike jersey to add to my wardrobe and that search led to a couple of emails with the NF Endurance Team coordinator who asked if I'd consider joining. I was already signed up for The Death Ride - Tour of the California Alps for the second consecutive year and knew it was perfect to use as my "NF Endurance" event.

NF causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. It is under-recognized and underdiagnosed yet affects more people than cystic fibrosis, Duchenne Muscular Dystrophy and Huntington’s Disease combined. One in three thousand have Neurofibromatosis 1.

I am extremely lucky. My case is comparatively mild. The thing is, severity is a complete crapshoot. Others with NF1 suffer terribly. Once born with the gene, it's just luck of the draw. 

I was diagnosed when I was fifteen and little was known about the disorder and what was known was very unsettling. "The Elephant Man's Disease," it was called. Now kids are diagnosed when telltale birthmarks called, "Café Au Lait" spots appear in the first few months of life, known as such because of their color. 

I have many café au lait spots. They showed up when I was about two months old and from then on my mom called them my "Love Spots." I also get two kinds of tumors that grow on my skin, and others that can grow anywhere inside my body. The most superficial of them all are called, "fibromas" that have grown all over and look like a mosqito had a very satisfying meal, but they cause little more than a jab at my vanity. There is a very small chance that a couple I have may cause mobility issues in the future but that's a long shot because they luckily grow very slowly, and they can easily be removed. As I age, more grow and in the right light, especially right after a bike ride, I can see hundreds. I just decided I should call them my "Love Bites." Ha! I just thought of that!

The other type that appears on my skin actually starts on nerve sheeths a couple of layers deep and are called "Plexiform Neuromas." These are painful. When I was around eight I would tell my mom it felt like I had a sunburn underneath my shoulder, but there was no sign of a tumor to the eye. As I grew into my teen years it became visible. Slowly it grew into a bumpy, saggy, ugly mass, and I became selfconscious enough that I stopped wearing sleeveless shirts because whenever I did, I'd see eyes stare at my shoulder instead of looking at me when I talked with people. In my twenties I started describing the pain as random stabs with an Exacto knife that would surprise me at any time, grind away for a few seconds, and then subside. 

In 2005 with a great job and excellent insurance it finally occurred to me that I could have it removed. The twist with the removal of these growths is that if any tiny fiber is missed by the surgeon it can grow back, but like the others, they grow slowly. In 2014 I had the same pain in my other shoulder and discovered another tumor which I had removed right away before it was even visible. There's another growing on my torso that I'll deal with at some point in the future.

I also have the propensity for tumors to grow anywhere inside my body. In 2014 I had one of these removed from where my pancreas and liver ducts empty into my small intestine. This type is a "Neuroendocrine Tumor." It wasn't until after its removal that I understood that NETs are a type of cancer that doesn't matastisize, so once it's gone it's gone, unlike the mottled mess that had grown on my shoulder. This one in particular has changed my life. The tumor had been compromising the funtion of my pancreas for so long I had no idea that my symptoms were symptoms. Now with the tumor gone and a clear understanding of its impact, I eat very little fat and take prescription enzymes with each meal and probably will for the rest of my life.

There is no predictability of when or where on my body any of these tumors will appear.

But my case is nothing compared to those I've met who were born with the exact same gene. I may be slowed down for a few days after a surgery but my daily life isn't impacted at all. One woman I met lost her legs as an infant because NF attacked the growth of her tibia and fibia in both legs. She runs marathons on blades. But any more detail I'll leave for you to Google "Neurofibromatosis 1." That way you can gauge on your own how much detail you want to know. I would like to warn you here though, that some of the photos of how the gene has manifested in others may be difficult to see.

The Children’s Tumor Foundation funds critical research to find treatments for NF. I'm on the registry list so that when studies are done for which I qualify, I participate. Most of the studies have only required my answering questionaires but from my turmor removals I have arranged for my tissue to be sent to medical teams who are doing this kind of research. 

On July 8th I'll be riding 129 miles in the California Sierras to raise money for the foundation. It climbs five mountain passes with a total of 15,000 feet of elevation gain. We leave from Markleeville, California (about thirty miles south of Lake Tahoe) in the early-dark of morning and ride to Monitor Pass, go up and over and at the bottom of the other side make a u-turn and ride back up and over. At the bottom we ride to Ebbet's Pass and do the same. After Ebbet's we ride to Carson Pass, are greeted with the traditional ice cream at the top and ride back down the same side to our starting point. You might think the best thing about the ride is that half of it is downhill, but in all seriousness, I love to climb!

When I was in high school fundraisers were always calculated by so much a unit. We did twenty-four band-a-thons and asked for so much an hour; and swim-a-thons and asked for so much a lap. The Death Ride has a lot of options! If you'll consider making a donation you might want to split it up as so-much a pass, or a mile, or a foot of elevation...up or down! I'm planning to finish riding all five passes. Split it up as you'd like, because as you well know, every donation helps. After I finish I will post pictures and details of the day on this page.

Today, April 9th I'll be riding the Medium Route of 'L Eroica California. I'm considering it a training ride for The Death Ride. And appropos enough, this Tuesday, the 11th I'll be traveling by train 210 miles south to Cedars Sinai Medical Center for my annual Endoscopic Ultrasound so that my doctor can check the spot near my pancreas. After the ride today, the idea of a deep, anesthesia-induced sleep sounds wonderful! But really, I expect the results to be positive. Last year he threatened that, "Next time if all looks the same, I many not need to see you for five years." That'd be great news!

Feel free to contact me with any questions about NF1. Over the years I've learned a lot about my disorder. I am completely comfortable talking about it and showing off my beautiful scars, bumps, and spots. 

Thanks for your help!
#ENDNF.

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The Cause
Alexandra Robin is fundraising for NFE 2017 DIY NF Endurance benefiting Children's Tumor Foundation.

Yesterday, October 14, 2017,  after such a discombobulated season, we did what we set out to do: complete a big ride for the Children's Tumor Foundation and Neurofibromatosis.

The Lighthouse Century was epic this year. It's a local ride that's been going on for about forty years and known for the fantastic tailwind for much of the second half of the ride. In those days it left the San Luis Obispo Mission and went straight up the coast to Piedras Blancas Lighthouse and back.  The route has changed for different reasons over the years and this year, with Highway One closed past Ragged Point, the ride started in Morro Bay, went up HIghway One, jogged up and over Highway 46 to the outskirts of Templeton, then back out to the coast and continued north to a turnaround a few miles south of the lighthouse. Climbing 1,752 feet up Highway 46 from sea level and the beautiful Pacific (mile twenty to thirty-five) we had gusts of wind slamming us at over 40 mph. 

When I was riding in the 80's I heard, "Bike racers in Holland don't have hills but they have wind. That's what makes them mean." It wasn't a judgement on who they were off the bike, rather a compliment to their strength and perseverance on it. It's one thing for my small frame to get blown about, but my big strong beau came within inches of being blown down a steep mountaiinside from the well-marked, eight-foot wide highway shoulder on which we rode.

We had swirling crosswinds all day and with all my grumbling at the wind I thought of kids with NF who can't ride a bike. I passed out the card I'd made to many people who asked about our jerseys. "END NF" they read. People showed genuine care and interest when I shared a bit of my story.

That afternoon we went to a completely unrelated wine event. Having dedicated the day to NF I was wearing my t-shirt version of the same design. A woman from out of town (who had been invited to the event by a friend at the last minute and had driven 200 miles north for the day) approached me and told me her friend's eight-year-old had NF and was bound to a wheelchair.

I have the same gene as that little girl, Abby. The woman said Abby's mom didn't even know the Children's Tumor Foundation existed and was coping with everything on her own. I swear that woman was a beam of light. Her positive energy and happiness glowed! Later that afternoon she seeked me out and thanked me again, told me she couldn't wait to tell her friend all about CTF and meeting me, and said she'd be in touch.

If nothing else came of the day; if all of the business cards I handed out during the ride have gotten tossed in the trash without a thought, THAT made it all worthwhile. 

Your donation made that difference.

Thank you so much for your generous support!

For a look at the ride click here.

 

UPDATE #2!!

Wellllllll, The Napa Valley Century went on without us. After driving twelve hours round trip and staying in hotels two weekends in a row we couldn't justify another trip away so soon after our ill-fated trip towards The Death Ride. Now the plan is to stay local. On October 14th we will participate in The Lighthouse Century right here in our own backyard. What a discombobulated season this has been!  In the winter months rain kept us off our bikes. These summer days with temperatures soaring over one hundred five degrees have done the same.  October on the coast will be delightful. 

 

UPDATE!!!

As the week tumbled by with the truck back home and ourselves back at work, I finally had some time (at 3:40 a.m.) to add this update. Actually I'd been trying to write it up for days in the form of a card to send out the old fashioned way to all my generous donors but decided to resort to writing an email to them because this is truly just an update with a twist; and I'm posting it here as well.  There is more to come...
 
On our way to The Death Ride at about 9 pm on a dark mountain Highway 88 (sounds like a song!) while pulling our twenty-four foot camping trailer, our Ford 250 truck's alternator died.
 
We limped without headlights or any other power in the truck for what seemed like a very long time though was probably less than five minutes, to a place to pull over and figured we'd sleep and deal with it in the morning. Here's what happened:
 
July 6: After pulling over with the dead alternator, two nice CHP officers came by and the one in the SUV strapped the truck and trailer up and dragged us fifty feet forward to get out of the way of a gate and fence.
 
July 7: WBF (Wonderful Boyfriend) hitchhiked six miles to town for a new alternator, got a ride back with an Auto Zone employee and they installed it on the side of the road. We thought we were on our way but the truck continued to have issues. After many stops and starts, the CHP escorted us to back to Auto Zone to charge the truck batteries. We limped to the recommended auto shop three miles away. We learned that the transmission was toast and decided that towing it home was the best option.
 
July 8: We coordinated a tow home and how we were going to store the trailer for the week.
 
July 9: The tow service from homeng left at 3:00 am and drove the 268 miles to pick us up. Great guy, bench seat, no air conditioning, 106 degrees.
 
July 10-14: The transmission was rebuilt by our local mechanic.
 
July 15: With the new transmission, we drove back up north, picked up our trailer, and took a mini-vacation wandering old western towns while waiting for the shop to open on Monday morning.
 
July 17: Hooked up the trailer and drove it home.
 
Soooooooooooo, on our way home we decided on our "make up" century. There are many from which to choose between now and the end of the season, but as it turns out, on August 20th The Napa Valley Century has an official NF Endurance Team participating! The director of the program has offered to set us up to stay with a family affected by NF the night before the ride. I have the feeling that it will be an amazing experience.
 
Join us!! Think about it! Seriously!!
 
I will keep you posted, but to keep you even up to date with the most current shenanigans, go to https://doublecommitment.com to see the latest.
 

...My original post:

Many of you know my passion for riding a bike lots of miles in one sitting, but I think only a few of you are aware that I was born with a genetic disorder called, "Neurofibromatosis 1." I've often thought I should combine the two and organize some sort of bike ride fundraiser for research and in the last few months the idea snowballed. I'd been thinking about finding an NF bike jersey to add to my wardrobe and that search led to a couple of emails with the NF Endurance Team coordinator who asked if I'd consider joining. I was already signed up for The Death Ride - Tour of the California Alps for the second consecutive year and knew it was perfect to use as my "NF Endurance" event.

NF causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. It is under-recognized and underdiagnosed yet affects more people than cystic fibrosis, Duchenne Muscular Dystrophy and Huntington’s Disease combined. One in three thousand have Neurofibromatosis 1.

I am extremely lucky. My case is comparatively mild. The thing is, severity is a complete crapshoot. Others with NF1 suffer terribly. Once born with the gene, it's just luck of the draw. 

I was diagnosed when I was fifteen and little was known about the disorder and what was known was very unsettling. "The Elephant Man's Disease," it was called. Now kids are diagnosed when telltale birthmarks called, "Café Au Lait" spots appear in the first few months of life, known as such because of their color. 

I have many café au lait spots. They showed up when I was about two months old and from then on my mom called them my "Love Spots." I also get two kinds of tumors that grow on my skin, and others that can grow anywhere inside my body. The most superficial of them all are called, "fibromas" that have grown all over and look like a mosqito had a very satisfying meal, but they cause little more than a jab at my vanity. There is a very small chance that a couple I have may cause mobility issues in the future but that's a long shot because they luckily grow very slowly, and they can easily be removed. As I age, more grow and in the right light, especially right after a bike ride, I can see hundreds. I just decided I should call them my "Love Bites." Ha! I just thought of that!

The other type that appears on my skin actually starts on nerve sheeths a couple of layers deep and are called "Plexiform Neuromas." These are painful. When I was around eight I would tell my mom it felt like I had a sunburn underneath my shoulder, but there was no sign of a tumor to the eye. As I grew into my teen years it became visible. Slowly it grew into a bumpy, saggy, ugly mass, and I became selfconscious enough that I stopped wearing sleeveless shirts because whenever I did, I'd see eyes stare at my shoulder instead of looking at me when I talked with people. In my twenties I started describing the pain as random stabs with an Exacto knife that would surprise me at any time, grind away for a few seconds, and then subside. 

In 2005 with a great job and excellent insurance it finally occurred to me that I could have it removed. The twist with the removal of these growths is that if any tiny fiber is missed by the surgeon it can grow back, but like the others, they grow slowly. In 2014 I had the same pain in my other shoulder and discovered another tumor which I had removed right away before it was even visible. There's another growing on my torso that I'll deal with at some point in the future.

I also have the propensity for tumors to grow anywhere inside my body. In 2014 I had one of these removed from where my pancreas and liver ducts empty into my small intestine. This type is a "Neuroendocrine Tumor." It wasn't until after its removal that I understood that NETs are a type of cancer that doesn't matastisize, so once it's gone it's gone, unlike the mottled mess that had grown on my shoulder. This one in particular has changed my life. The tumor had been compromising the funtion of my pancreas for so long I had no idea that my symptoms were symptoms. Now with the tumor gone and a clear understanding of its impact, I eat very little fat and take prescription enzymes with each meal and probably will for the rest of my life.

There is no predictability of when or where on my body any of these tumors will appear.

But my case is nothing compared to those I've met who were born with the exact same gene. I may be slowed down for a few days after a surgery but my daily life isn't impacted at all. One woman I met lost her legs as an infant because NF attacked the growth of her tibia and fibia in both legs. She runs marathons on blades. But any more detail I'll leave for you to Google "Neurofibromatosis 1." That way you can gauge on your own how much detail you want to know. I would like to warn you here though, that some of the photos of how the gene has manifested in others may be difficult to see.

The Children’s Tumor Foundation funds critical research to find treatments for NF. I'm on the registry list so that when studies are done for which I qualify, I participate. Most of the studies have only required my answering questionaires but from my turmor removals I have arranged for my tissue to be sent to medical teams who are doing this kind of research. 

On July 8th I'll be riding 129 miles in the California Sierras to raise money for the foundation. It climbs five mountain passes with a total of 15,000 feet of elevation gain. We leave from Markleeville, California (about thirty miles south of Lake Tahoe) in the early-dark of morning and ride to Monitor Pass, go up and over and at the bottom of the other side make a u-turn and ride back up and over. At the bottom we ride to Ebbet's Pass and do the same. After Ebbet's we ride to Carson Pass, are greeted with the traditional ice cream at the top and ride back down the same side to our starting point. You might think the best thing about the ride is that half of it is downhill, but in all seriousness, I love to climb!

When I was in high school fundraisers were always calculated by so much a unit. We did twenty-four band-a-thons and asked for so much an hour; and swim-a-thons and asked for so much a lap. The Death Ride has a lot of options! If you'll consider making a donation you might want to split it up as so-much a pass, or a mile, or a foot of elevation...up or down! I'm planning to finish riding all five passes. Split it up as you'd like, because as you well know, every donation helps. After I finish I will post pictures and details of the day on this page.

Today, April 9th I'll be riding the Medium Route of 'L Eroica California. I'm considering it a training ride for The Death Ride. And appropos enough, this Tuesday, the 11th I'll be traveling by train 210 miles south to Cedars Sinai Medical Center for my annual Endoscopic Ultrasound so that my doctor can check the spot near my pancreas. After the ride today, the idea of a deep, anesthesia-induced sleep sounds wonderful! But really, I expect the results to be positive. Last year he threatened that, "Next time if all looks the same, I many not need to see you for five years." That'd be great news!

Feel free to contact me with any questions about NF1. Over the years I've learned a lot about my disorder. I am completely comfortable talking about it and showing off my beautiful scars, bumps, and spots. 

Thanks for your help!
#ENDNF.

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The Campaign:

NFE 2017 DIY NF Endurance

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The Organization:

Children's Tumor Foundation

The Children's Tumor Foundation mission is to: -- Drive research toward treatments and a cure for ne...

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